Still So Much Good Stuff To Come…

Me and my loudest child. Still not louder than me though

I’ve always been interested in people. I love all those little online personality tests and quizzes and love to learn about what makes other people tick.  I’m your typical sanguine – always wanting to be with people and not enjoying my own company very much. In fact – I pretty much hate being by myself – I get bored and need the people-to-people contact every day or I start to nosedive emotionally.

I also think that part of the reason why God gave me the kids that he did is because he knows how much people fascinate and interest me and he knows that I am the kind of person to dig deeper until I’m satisfied that I’ve learnt all that I can learn. Autism definitely adds a whole other layer to my kid’s personalities and a lot of the rules for typically developing kids don’t apply when you start to throw nuances like : sensory issues and still-developing social skills into the mix.

I have written a few times before about The Five Love Languages and how they helped me to better understand why Paul can be such a pain in the butt sometimes.

  Whoops! Did I really write that?

What I MEANT to say was that learning about love languages helped me to realise that he does in fact love me but doesn’t (even close to) speak the same love language that I do.

In a nutshell – There are 5 languages.

1. Physical Touch (not sexual)

2. Words Of Affirmation

3. Quality Time

4. Giving and Receiving Gifts

5. Acts Of Service

And everyone has a primary love language and usually a secondary one or two as well. They are the way that we show others that we love them and what makes us feel loved the most.

****

For example: My primary love language is Words Of Affirmation with physical touch and quality time following closely behind. That means that I give love via what I speak and write to people. I am more aware than a lot of people of the absolute power that words can have on a relationship in either a negative or positive way. The best way to hurt me is to ignore me, use harsh or insulting words to speaking to me or to withhold kind and encouraging ones as well. I am careful what I write or say to people because of this.  I am also a big hugger and I love to spend time with my friends.

 (And amusingly enough – I hoped to churn this post out a few hours ago but I got waylaid by chatting to a friend making this a perfect illustration!)

But tonight’s post isn’t going to be about marriages, or any type of adult relationship but about my kids. Specifically about my relationships with each of them and how the love languages apply to them individually. And lately I’ve spent a lot of time peeling back the layers of my children’s individual personalities to try to discover the best and most effective ways that I can love them.

Ella’s primary love language is Quality Time which actually makes me sad because the boys tie me up so much that it’s often hard to give her much of it. But we have been consciously making the effort to go out on Mum/daughter days a lot more often than we used to. The downside is that she is at risk of feeling unloved if she doesn’t get enough quality time with either of us. There’s always room for improvement though and I am determined to give her what she needs.

Harley was a no-brainer for me. He is exactly the same as me – Words Of Affirmation and Physical Touch. He loves his cuddles and a compliment can make him float for days. Conversely though, like me – he also gets extremely hurt by unkindness and needs to be built up very frequently. Things that other kids could just shake off can stay with him for a long time and can do a lot of unnecessary damage.  I understand the love languages side of Harley the most out of all of my kids but I am also regularly confused by how differently it presents on him compared to me. I think this has something to do with his wonderfully wired brain and how differently it processes things but I’m still working on figuring this one out.

And then there’s Lucas. He was a particularly difficult one for me to figure out. I had to do a number of quizzes on him until I had what I considered to be the correct answer but even now I’m still not 100% convinced.  I asked him to tell me what I do that makes him feel the happiest and most loved.

I put it to him like this:

Would you prefer:

1. A cuddle and kiss? (Physical Touch)

2. A new toy (Giving And Receiving Gifts)

3. For Mummy to tell you how proud she is of you (Words Of Affirmation)

4. Mummy to spend the afternoon playing Trashies with you (Quality time)

or

5. For Mummy to clean your room up and make you a cake? (Acts Of Service).

He answered that a hug would be his favourite which interested me for a few reasons. Firstly because it was the very first scenario that I put to him (and perhaps the only one that he actually heard and processed) so to get a definitive answer, I put different scenarios to him mixing up the order each time, But each and every time – it was Physical Touch that won out. The other reason that this surprised me was because every time that I hug Lucas – he only stays in my lap for mere seconds before jumping off again in another Tiggerific  bouncing episode.

So now – I’m wondering how much of a part that both of the boy’s sensory processing difficulties play in the way that they give and receive love and how much autism affects their ability to feel loved and safe when they need it most. I’ll explain further:

When Harley becomes overwhelmed by too much noise, too much light or by strong smells – he can’t stand to be touched at all and he becomes aggressive and sometimes violent and screams out the most awful things.  And it’s the same when he’s in the middle of a meltdown.

He has described to me on a good day that when people try to talk to him when he’s in that state that the human voice aggravates and irritates him more than any other sound. I find that incredibly fascinating. Especially since any other time – Harley  is incredibly affectionate and very generous with his hugs and kind words.

And Lucas – well he is similar to Harley in that he also cannot stand to be touched if he’s overwhelmed or melting down – and he says that the human touch actually  makes his skin feel like its burning. But here’s what I find amazing – As Lucas is coming down from an episode – he  is OVERLY generous with hugs and climbs into my lap and wraps my arms around him refusing to leave.

So the things that bring them comfort and calm them on a good day are actually the same things that can escalate an explosion on a bad day.

***

I already have huge amounts of much respect for all individuals on the autism spectrum but now: WOW!  It has gone up a few hundred notches. I’m sure that there are bundles and bundles of undiscovered information and so many more layers to peel back still for my children and  I know that I have SO much more to learn about all of this.

The exciting part?

It has become like a neat little project for me….. Bring on 2013!

Measuring success…

Image from snapsurveys.com

I’ll let you all in on a little secret: When people talk to me, write to me or ask me questions, I always go away and analyse the entire conversation and make mental notes afterwards. I have learnt a lot about myself as a parent, friend and person by trying to see things from other people’s perspectives.

A new follower on my Wonderfully Wired Facebook Page asked me just today: “How do you both stay on the same page as to what the ‘right’ thing is to do in a situation?”

I waited almost an hour before answering this because the question caused me to stop and think for a while before I felt that I could answer it properly. I actually laughed out loud when I first read it because from where I sit – we don’t agree on ANYTHING and are failing miserably as parents!

We almost never see eye-to-eye on discipline or parenting. I think he is too harsh and he thinks I am too soft. And our marriage has been through some mighty big ups and downs because of this but we are learning to focus on the child and their needs instead of trying to just be heard (or right) ourselves. So I wrote and told her that there is no right way and that it’s different for every family. It’s about working out what’s worth the fight and what’s not and about choosing to do what’s best for the child. It’s also about educating yourself and discovering the difference between naughtiness and sensory overload, between a tantrum and a meltdown and recognising the times when bailing out is your best option. Despite how you actually feel. (And wow do I struggle with THAT one).

I’m a very social person and having to learn to leave when my son has had enough was a tough one for me. But parenting kids in general (and especially when they have high needs) is ultimately all about sacrifice.

Sacrificing the need to be “right” all the time and sacrificing what you want to do in favour of what your child actually needs. But sacrifice isn’t always a negative word. Sacrifice can also mean: devoting, dedicating and giving.

Most of the time I am prepared to put in whatever it takes now because I know the rewards will make it all worthwhile one day. But there are many days where I still stomp and moan and carry one because “It’s not faaaaaaair, I can’t dooooo this!”  And I have spent a lot of time on my knees crying out to God begging Him to make my life simple and take away all the “hard”. I have also yelled out “What did I do that was SO WRONG that this is the life I’ve been given”.   So don’t think for a second that I breeze through this autism parenting thing…Or parenting at all for that matter!

But I’ve discovered that anyone who makes the choice to blog about their family and living with autism walks a very unsteady balance beam every time that they write. I have noticed that if I write too much about the hard times – I get criticized for being an attention seeker and for painting my children in a bad light, but if I blog about only the good stuff – there are people who read it and wonder why they can’t get it right and wish that their kids were progressing as much as mine are and wonder what they are doing wrong. I’ve even had people ask me what my secret is???

But here’s the thing.

NO family has it all worked out. NO family gets it right every-single-time and NO family could honestly tell you that autism hasn’t rocked their world in some ways.

And any parent with a child on the spectrum will tell you that often our kids will take one step forward and then ten steps backwards and it’s hard sometimes to stay cheerful and positive when you feel like screaming and throwing in the towel. But I try. And I keep putting one foot in front of the other and keep doing my best because they deserve nothing less.

However – I have learned a new way to measure how we are all doing. And it has NOTHING to do with comparing our life to other families. Even those families with autism because every-family-is-different.

I now look at a situation and ask myself – how does this compare to last week, to last month and to last year? And if I can honestly say that we have moved forward (even if only mere millimetres) than it’s marked as a success.

Things don’t have to be easy and wonderful all the time but I’ve learned that progress is progress no matter how small and insignificant it may seem at the time. 12 months ago we wouldn’t have even have attempted going to Costco but two days ago – WE DID IT!

I’ve put dreams on hold, I’ve opted out of a lot of things that I really wanted to do and almost every day I have to remind myself not to live in regret and for the most part – I am happy. I’ve learned that it’s no longer all about me. I have a purpose and I will do my best to make sure my kids grow up to be successful.

And that’s really all that any parent ever hopes for.

I have love.

I’ve was sitting down at this computer for several hours this morning writing out whatever came into my head. I was trying to process some big stuff that’s going on here and writing it out usually helps me to make sense of it all. Heck – I stayed up most of the night trying to write it out and got nowhere.

And it didn’t work today either.  At all.

Words were looping in my brain and the solutions all seemed so far off. So I turned on some music, closed my eyes and tried to slow my brain down by forcing my thoughts to go elsewhere.

 I do wonder at times like this just how much aspie there is in me. Maybe I’m not as neuro-typical as I first thought? Or maybe this is a normal reaction to too much stress and confusion.  I just don’t know and don’t particularly care right now.

I turned off the computer and moved over to the lounge room to lay down on the sofa. I could hear the children playing in the background – the sound of the Ninjago app I recently downloaded was coming from the iPad.

My daughter was watching one of her teen shows on TV and the little one was rolling around on the rug piling cushions on top of himself because he was seeking sensory input. I looked at each of them and smiled. They really are everything to me. So different to one another – so unique in their own special ways.

Ella walked over to me and handed me a coffee. It was strong and black – just the way I like it and sat down beside me putting her tiny waif arm around me pulling me close and kissing the top of my head. The daughter was comforting the mother – so wrong yet so RIGHT. And this action in itself is HUGE because she is not a touchy-feely person at all. But my girl sensed that I needed to be held.

In that moment I thanked God for allowing me the privilege of raising her.  I love her so much and can’t believe that I have been trusted with so much.

I looked over at my big boy and noticed him reading his new Ninjago book intently.  He was engrossed and sitting on his haunches just like my Dad used to do. A tear came to my eye and I wiped it away quickly. I couldn’t afford to lose it, there was too much to be done.

My little one had progressed to doing laps of the living area. He had set up an obstacle course with toys, bean bags and cushions and was jumping, skipping and hollering with delight. My problems suddenly seemed so insignificant.

I closed my eyes and lay my head back down and drifted off to sleep because I had been awake for most of the night. When I awoke later I heard giggling in the kitchen and I crept out to see the three of them working as a team. They were making me the most disgustingly wonderful sandwich I have ever seen. And instantly nothing else mattered.

I realised right then that I have everything because I have love.

It may not always come from where I most desire it, and it is sometimes disjointed and awkward and usually messy, but I have love.

Thank God for love. Thank God He loves me more than any other human being could possibly love me.

Thank God that He sees me and not the mess I have made of my life, and He loves me still.

Have a great weekend all.

x

Yes – it’s an old pic but the only one I could find with all 3 kids in it

Sneakiness has its merits…

My friends are sneaky.

Not all of them, but some of them.

These are the friends who instinctively know when I’m off my game and don’t let me fade away because they know its not good for me. They know that when I withdraw it’s an alarm signal.

You know……

• The email that states that I’m not required to respond but that they want me to know that I’m being thought of and prayed for.
• The text messages that are innocent enough but have a deeper underlying purpose….digging for details on how to help me. Or even asking a mutual friend to contact me to check that I really am ok.
• The phone call out of the blue just to say “Hi” .

And then there was today. Today a friend took me out for lunch. And the fact that I can boldly say that it was the best gluten-free meal I have ever eaten to date is not the most meaningful thing that I took away from our little rendezvous. The wonderful quaint little gift shops that we browsed in wasn’t it either. And believe it or not: it wasn’t even the amazing coffee we had. No. It was “where” she took me. She knows me and what I love the most.

Remember in previous posts where I have written that sometimes I need to escape to the country to find my balance again? That there are days when I just need to get away from the stress and hectic pace of my life and clear my head?

Well….she took me there. To my favourite little country getaway with the beautiful people and the incredible landscapes and cute little churches.

She’s clever isn’t she?!

But I didn’t work out her plan right away.

Sure she mentioned that she’d noticed that I sent her a picture last night instead of writing but I didn’t think too much of it at the time.

I savoured my lunch. Well no, actually – that’s a complete lie – I wolfed down my sourdough chicken burger like there was no tomorrow! But what I mean is: I was content in my surroundings and relaxed and happy, I was laughing, chatting and absolutely in my element. And I haven’t been in that place of contentment for quite a while now.

My friend asked me if I could picture myself sitting outside on the verandah with a coffee listening to the bell birds with my iPad in front of me writing. And even then, I still didn’t realise what she was doing. I’m not even sure if it was deliberate or not but it worked.

I turned a corner. I was able to quash the feelings of inadequacy and standup to that voice in my head telling me that I’m a waste of space and mentally yell back at it: “What I think and write and who I am is important so SHUT UP!”

Giggle ….giggle….I like feisty Fiona …

My friends know that writing is what works for me. It’s how I process my thoughts and work through emotions. But lately I have shunned writing. It has all been too hard and I really wasn’t keen on facing any of my challenges head on.

I kept my head stuck firmly in the sand refusing to face up to anything.

There has been a lot of stress here lately and the fact that our house is currently on the market hasn’t helped. We have had a low offer which we refused and another offer of the exact amount we were hoping for only to have the buyer change their mind and withdraw their offer 2 days later. At this point it looks like we’re staying put and I’m more than happy with that right now.

Also: it is the last week of school next week and the exhaustion and frustration is evident in all of the children but especially Harley. He is tired. He has mentally signed off for the year and is coping by tuning out everyone and everything. (Hmmmm. wonder where he got that from?) hehehe

There have been challenges in our marriage and struggles in our family dynamic and its all gotten on top of me.

But my friends haven’t deserted me. Even though I know I’ve been difficult and aloof lately, the emails and texts have been constant and kind and caring. I have needed them . They are truly what have kept me going.

That and the reminders of where I need to get my strength. I admit that lately I have stopped laying all my cares at the feet of Jesus. I have tried to do it in my own strength and failed miserably. But just like my friends here on earth He hasn’t forgotten or forsaken me. And for that, I am truly thankful.

I have learned that unlike my husband and sometimes my boys; I need people. I need to chat, to hug, to be hugged and to do life alongside others who get me. Some people do well by limiting their interactions but I’m not one of them. I crave human contact and start to nosedive whenever I choose to isolate myself.

And tomorrow night: I hope to write more about the past few months and the awesome progress that my boys have made.

The clouds are clearing: the sun is peeking through and the curtain of lethargy and depression is lifting.

And even though I was raised in a Pentecostal church – I am still partial to the odd old hymn. Like this one because it just sums it all up perfectly.

It is well with my soul.

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.
Refrain:
It is well, (it is well),
With my soul, (with my soul)
It is well, it is well, with my soul.

Walking in my son’s shoes

“Leave me the hell alone!” I shouted as I threw my iPhone and watched as it hit the nearest wall.
I had no idea who was on the other end because it was coming from a blocked number, but I did know that I couldn’t possibly have dealt with one more person wanting something from me yesterday.

I was well and truly out of patience and at the brink of tipping over the cliff.

I took a deep breath, steadied myself and walked over to retrieve my poor phone from it’s resting place on the tiles half expecting it to be smashed into pieces to match my emotional state. But I was surprised to see that it only had a few minor scratches and I smirked to myself thinking: ‘maybe there’s hope for me yet’.

I sat down on the floor and put my head on my knees and took several more deep breaths.

I couldn’t believe it, I’d lost my cool AGAIN! I was coming apart at the seams and it scared the heck outta me.

And what made it worse was the realisation that this one had nothing to do with autism but everything to do with my mental state. I hated that I was back there again.

***

Every school holidays, mothers all over the world have to deal with exactly the same things that I do. Fighting children, constant hunger and requests for snacks, being told by their kids that they’re ‘bored’ several times a day, messy houses and endless chatter to name just a few. And I’ve always wondered if the other mothers that I observe really do just take it all in their stride and how many of them actually end up like me and continue to fall deeper and deeper into the bottomless pit that is depression instead.

Because, unfortunately, depression is still a major taboo in today’s society and no-one wants to talk about it so we all put on the same stupid brave faces and play by the rules smiling through tears and broken hearts.

And for me, this stupid depression is really such a chicken and egg type situation because I’m honestly not sure if my depression is a by-product of the stress that goes hand-in-hand with raising children with special needs, or whether I struggle MORE with raising these kids because of the depression that hangs over me. I just can’t figure it out.

Depression is such a complex ailment. It is like diabetes in the sense that nothing good comes from receiving the diagnosis and while it can be managed: sufferers really do wish that it would just go the hell away. No-one is thrilled when they are diagnosed and it really can make life such a pain in the butt.

But the comparisons end there.

Diabetes is a socially accepted medical condition because it’s got nothing to do with a person’s psychology but sadly, almost every single disorder that is connected to the brain brings with it harsh judgement, criticism and a negative stigma : Including Autism, ADHD anxiety and various other neurological conditions.

There are (and will probably always be) a portion of society who refuse to believe that these are true and very real diagnoses and people like me continue to fight for those whose lives are affected by one or more of them.

Because unlike diabetes; autism, anxiety disorders and depression are all hugely misunderstood. And depression and anxiety almost always go hand-in-hand.

Depression is always exacerbated by stress and stress comes from anxiety which is a common reaction when you’re in depression.

A vicious cycle indeed!

Then add to that the perception that it’s all about choices and that the depressed person should just ‘snap out of it’ or ‘get over themselves’. That kind of thinking is really unhelpful. And so is telling the person that they should be thankful for what they do have instead of focusing on the negatives. Comments like that are a huge slap in the face and totally undermine and devalue the depressed persons cry for help.

None of us choose this life. We all hate it as much as the rest of you hate hearing about it.

***
Anyway: I forgot to take my medication yesterday hence my complete mental breakdown and freaked out state.

There’s a very good reason that the Doctors tell people not to go off their meds without Dr supervision. It needs to be done slowly and over a very long time period.

When I awoke this morning, I thought I hated being a mother, I thought I hated being a wife and I wanted to run far, far away and never return. I wanted out and I didn’t care who was hurt in the process. I wanted to quit and to give away my children. I wanted to start again.

I recognised that I was heading downhill fast so I told Paul that I HAD to get out so I went for a drive to try to clear my head that was pounding furiously. He joked that I had to come back and we laughed about it but I seriously wanted to keep driving into the sunset.

I drove to the nearest shopping centre with the intention of grabbing a quick take-out coffee but as I stepped into the shopping c, I was hit by a wall of noise that immediately disconcerted me. I placed an ear plug into my ear (I’m deaf in the other) and put my hands in my pockets and walked with my head down. I could still hear every child’s shriek, every word of the song playing over the P.A. and the conversations of those near me. Sounds were mostly muted but still recognisable.

I felt blinded by the bright fluorescent lights above me and the neon shop signs around me were making me dizzy. I took a short cut through a department store and found myself having to block my nose by burying my face into my shoulder because my detour went through the cosmetics and perfume department.

My sensory system was on high alert, my anxiety levels were soaring and I just was.not.coping!

I grabbed my coffee and got the hell outta that centre as fast as I could go and went and sat in my car for the next 2 hours.

Alone.

Almost in silence.

Praying.

I asked (begged) God to show me what was going on with me. I asked Him why I was spiralling out of control and pleaded with Him to make it all go away.

It didn’t. But I don’t believe that God ignored me or refused to answer me. Because He did answer me, just not in the way I’d expected him to.

I was finally able to see that giving up or walking out is simply not an option. I realised that my purpose is still very much alive and that I needed to experience such lows today so that it could all become clear to me once again.
I needed to go through what my son goes through every time he leaves our house to help me to gain a better understanding of his struggles and “walk in his shoes” so to speak.

When I got home again, I sat down and chatted with Harley. I described what I felt today and his eyes were filled with amazement as I told him how the noises, lights and smells made me feel. I told him that I was sorry that I don’t always make allowances for him when I should and promised that I would try harder in the future.

He leaned over and hugged me and said: “You’re the best mother in the whole UNIVERSE”

And once again I sat there crying like a little baby.

But this time the tears were happy tears because I know….I KNOW it’s all going to be ok.

 

Dear 17-yr-old me

Wasn’t I SO fashionable at 17?

I had a coffee with a close friend this morning and as we always do, we chatted, we laughed, and we shared stories for a while. And then the conversation took a different direction and she asked me a question that I have been mulling over for most of today.

We were chatting about my blog and she asked me how I think I would be (coping) if I didn’t work through my emotions and struggles via blogging. At first I giggled and rolled my eyes because the thought of me without a release valve is an extremely frightening thought, but then I realised that writing has absolutely taken the edge off my emotional frazzledness. (See that – I just invented a word!)

And then this afternoon, my brain went on a completely different tangent altogether as I started thinking about how I would have reacted if someone would have told me how my life was going to turn out 20 years ago. So I’ve decided to dive headfirst into the old blogging idea of writing your younger self a letter and I have chosen the age 17 because that’s 20 years ago from the age that I am now.

Ready?

Good. Cos I’m not!

Dear Fiona,

You will eventually learn to like your name. You will never love it but you will one day actually tell people your real name when they ask. You think it’s funny now when you tell people it’s Beryl and giggle at their surprised faces, but it will get old fast.

So, do you see those people that you’re sharing the school playground with? Yeah, well you don’t have to be friends with all of them after school finishes for good next year. Some of them you will lose touch with and you won’t care at all, but others will always hold a special place in your heart and you will reconnect with them when you’re all grown up. They will mean more to you then than they do now because age brings new perspectives.

And your parents? You think they’re old and don’t understand you but you really need to know just how much they * do* love you. I mean REALLY love you. So much more than you could ever realise. One day you will have children of your own and only then will you actually “get” it.

After you leave school, you will move a long way from home because you think you know better than anyone but guess what? You don’t.

You will get yourself into some mighty fine messes and your parents will dig you out every.single.time because they love you that much. You are stubborn though and it will take you a long time to realise this and thank them for it.

After spending another 2 years doing some really stupid stuff like jumping from job to job and hanging out with the wrong crowd you will eventually tire of the rebellious lifestyle.  But do you remember the story about the prodigal son in the bible? Yeah, well good, because that’s kinda who you become.

You will eventually go home with your tail between your legs and move home again until you get back on your feet. And your parents take you in with open arms and love on you and encourage you to right your broken relationship with Jesus. It will be the best thing that you will ever do.

Your Dad will teach you that if you have God in your life; anything else is just icing and that you need to look to Jesus for happiness because a man will never provide what only God can.

He will teach you that all men and women are flawed by their human-ness and will ultimately fail you at one time or another because of this, but that God will never let you down.

You will never forget this and there will be times in your life that you hold fast to this teaching because people will let you down but you will only be disappointed – not destroyed.

You will marry and it won’t always be smooth sailing, but you chose to put your hope in God so you’ll survive every storm intact.

You will have 3 children and they will bless you, frustrate you and complete you all at once.

But it won’t be easy. Two of your children will be boys and they will both have autism. You will fall apart at first but surprise yourself by picking yourself up and carrying on despite your heartbreak and lack of faith in yourself.

You will lose friends once the news gets out and it will hurt, but all will not be lost because much better and more loyal friends will replace the void that they left.

You will experience great loss in the death of your beloved Dad, great heartache in watching your children struggle and great pain as you endure a lot of personal health issues but you will survive them all and come out a stronger person at the other side.

Eventually, you will learn that you can find happiness and beauty in the small everyday things if you just stop long enough to notice them.

Autism will give you the ability to appreciate things that other people take for granted and bless you with the desire to be a better parent.

One day, you’ll read this letter back and you’ll smile, you’ll laugh and you’ll wipe away stray tears that inevitably fall, but you will know that you have done the best that you can with that which you have been given.

And you will continue to rejoice through both hard times and good because you KNOW that life is what you make of it.

Love 37-yr-old you xxx

Love + sacrifice = progress

Not a proper post tonight….I’m just writing out some of my random thoughts… you know, working through some stuff that has been rattling through my brain of late

There is a saying that when a child is diagnosed with autism – the whole family is diagnosed with autism. And it has to be that way because every single member is affected in some way whether directly or indirectly.

It’s taken me the whole 5 years since we received Harley’s diagnosis to fully accept that things will never be the same as they were pre-diagnosis ever again. And for me – it’s was a very slow journey to reaching acceptance because – I’ll admit, that it’s a daily struggle for me to have to adjust my expectations and ideals.

The selfish part of me that creeps up occasionally wants to do things the way I’ve always done them.

See – I’m stubborn like that.

There are still many times that I have to stop and remind myself that we are an autism family and that what works for most families simply wont work for us. And then I have to make the necessary allowances to make it work, or deal with the inevitable consequences.

All mothers have to become selfless and put their child’s needs above that of their own in order to be an effective parent, but when you are raising children on the autistic spectrum – it’s even more important because their needs and daily requirements far exceed regular kid stuff.

I was told recently by a health professional that I’m going to have to eventually recognise that I don’t have a family that will fit into what society deems to be normal and that outings will often present challenges and sometimes I have to make the choice to either stay at home or leave ‘him’ at home thus separating the family. I need to choose which battles to major on and which ones to let slide.

Or, I could take the third option which is taking Harley out with us and being prepared that he may lose it or we may have to end up leaving early.

She said that this is just the way it is and that although things will get easier the more often that we do them – it’s always going to be something that we will have to work very hard at. And she emphasized the ‘always‘.

I sulked for a good week after I was told this. I knew it already in my heart but I let my emotions get the better of me.

Everything in me was crying out: “NO….it doesn’t have to be that way”…

But you know what? It actually does.

I’m getting a lot better at this as the months pass by and I can now admit that as a family, we are different and we have to do things differently. And I can even admit that even though it’s a huge inconvenience to me to have to make different choices – the truth is – my son means more to me than any preconceived ideas that I may have about what I really want out of life.

And that’s what growing up is all about… leaving behind what you think you want, so that you can make way for what’s more important and what is necessary in life. You make the big sacrifices because you love.

It’s that simple.

1 Corinthians 13:7
…love always protects, always trusts, always hopes, always perseveres…

No illness here.

I may be going out on a very thin limb in writing this post but I feel very strongly about this particular subject and the advocate in me isn’t prepared to sit down and shut up this time. It was conveyed to me recently that my children need healing and I prickled at this suggestion. More than I expected to.

I have come to realise that being both an autism parent AND a Christian who believes in healing can be a very contentious mix at times. And it’s probably not for the reasons that you think.

I believe in a powerful God who can do the impossible: but here’s what I DON’T believe: I don’t believe that autism is a sickness that requires healing.
And let me say up front that I am not nor will I ever be seeking out healing for my boys from their respective autism. They are not sick or ill or diseased, they are simply different.

But unfortunately, not everyone shares this view.

The word ‘advocate’ means to speak, plead or argue in favour of a cause that you believe in. And anyone who reads this blog would have noticed that I very much believe in my children and their potential and am not backwards in coming forward when it comes to creating awareness for autism.

See, here’s the thing. When I’m told that my child needs healing: I’m basically being told that there is something wrong with my child. I’m being told that they are not acceptable the way that God made them and that they are faulty, defective and sick. They are not being accepted for who they are.

You don’t pray for the well to be healed so why pray for healing from autism for my boys?

If they have a cold, a broken limb or a fever by all means intercede in prayer for them, but please don’t insult them and me by praying away the very essence of who they are.

Sure – I hate the anxiety, the fears, the hurt and the anguish that their differences may sometimes cause them, but I certainly don’t hate who they are. And I believe that discovering the difference between the two is paramount in understanding what autism awareness is all about.

I dislike that ordinary daily tasks are a challenge for my boys, I dislike that they struggle to just ‘be’ in many situations and I dislike that they are becoming more and more aware of their differences. But I don’t want them to feel that they need to conform to society in order to be accepted. I want society to change how they view those beautiful members of our community who just happen to have an autism spectrum disorder.

And I don’t see my children as broken, sick or in need of “healing”. I see them as Wonderfully Wired. I see them as having been created to be remarkable. Hence the name of this blog.

Asthma is an illness. Depression is a mental illness. Influenza, heart disease and cancer are all illnesses.

Autism is not. It does not need a cure or prevention. It needs love, acceptance, and people who are willing to look past the diagnosis to the heart of the person.

Look at these photos: Do these babies look “sick” to you?

No…..they are precious, they are wanted and they are loved.

I knew from the minute that I held them for the very first time as newborns that they have amazing futures and nothing is going to stop them from living their best lives.

Hope you’ve all had wonderful weekends.

Fi x

Where to draw the line….

 I have been having a lot of conversations with myself lately to the tune of whereabouts to draw that line?

And the line I’m talking about is the one between sharing too much online and sharing just enough. And to do this all whilst still maintaining my integrity and that of my family. It’s a tricky concept for me because I’m naturally a very open person and I’ve really had to allow God to guide me in this area.

My natural instinct is to blurt out exactly what’s on my mind and then go back and mend fences later. Sounds ridiculous I know but I have only in recent years been able to recognise that split second moment between using wisdom and having a verbal diarrhea moment!

I am a lot wiser nowadays but apart from using my children’s real names and our exact location, I do try to share anything that may be helpful to another family if only to show them that they are not alone.

Because here’s the thing: When I first started out on this journey…..I had no-one to tell me what was ‘normal’ in ASD world or what to expect in the coming days, months and years and really honestly felt like I wasn’t going to make it. So I started googling and searching and finding other blogs, and realising that we weren’t the only parents ready to tear their hair out frequently.

And we weren’t the only parents who have forgotten what’s it’s like to sleep uninterrupted through the night and we certainly aren’t the only parents who would give anything for their child to just make a damn friend!

But imagine if everyone who had written these blogs had decided that they weren’t going to tell it like it really is? Imagine if they only wrote what they thought would make people comfortable and that which paints a picture of the perfect family all sailing along beautifully. Imagine if they had drawn their line a lot closer to “need to know” and far away from their honest realities.

Wouldn’t I feel like total crap then?!

It’s through relating to another person’s experiences and THEN seeing them come out the other side that we are encouraged.

I rejoice with my bloggy friends when they experience a breakthrough but I also cry with them when they are in the midst of hard times. It’s that balance of difficulties and progress that keeps drawing me back to my friend’s blogs time and time again. Because I can relate.

I was involved in an incident at my children’s school on Friday afternoon where another flustered mother watched as my child completely and entirely lost it and nastily told me that “All kids have days like that occasionally, you autism mum’s think you own bad days ”.

And she’s absolutely right! ALL kids have days like that it’s true. But where she got it completely wrong was assuming that we think that we own bad days.

We don’t think that we deserve your pity or sympathy any more than any other parent, but we do have more experience in dealing with these types of situations simply because we deal with them a lot more often.

Buy what I actually think is that whether you’re parenting 1 child or 7 children, whether you have boys, girls, typically developing or children with special needs – it doesn’t matter….parenting is rough!

But her comment to me was said in a derogatory tone that really threw me so I didn’t respond to her at all but walked away and came home and picked it apart in my head for hours.

I wondered if she is hurting herself as a mother and feeling overwhelmed and unappreciated? I wondered if she wanted someone to reach out to her and she didn’t know how to ask for help so she just launched into attack mode? It may have been the only thing that occurred to her at the time?

Either way – I’ve had enough time to process this now and try to see the situation from her shoes and I’ve got to say – it all looks very different now to how it did on Friday.

~~~

As of yesterday, my Wonderfully Wired Facebook Page reached 159 likes. which absolutely blew me away. I searched through the list and found that out of that 159, I only know 26 of them personally as friends and only 7 of them are family.

That means that 126 people are also travelling down a parallel road to us and understand exactly what it is like to live in this house. That’s 126 people that can relate to our ups and downs and that’s really REALLY humbling for me!

But this train of thought brings me back to the mother in the playground on Friday.

You see – I’ve been on Facebook (partly why I quit for now), I’ve mixed in mother’s groups and I’ve stood around and observed body language and facial expressions on groups of mothers as they interact with each other. And frankly – It’s all a big competition.

Not many women will ever dare to show their true colours to their friends. It is an unspoken rule that to show weakness is unacceptable and puts a target on your head.

I learned a new phrase by Pastor Steven Furtick at our bible study this week that has REALLY helped me to understand this concept better and has challenged me in a really good way!

“The reason we struggle with insecurity is because we compare our behind-the-scenes with everyone else’s highlight reel”

 

And that is EXACTLY why I will continue to write about our life as it really is.

Have a great weekend all xx

Climbing out of the trench.

As regular readers will know: I have two children diagnosed with Aspergers Syndrome. And I’ve written many times that they are polar opposites in how they present. I have read a lot of blogs that say that parents like me are being unfair to the autistic community by presenting the negative side of autism.

But this my friends is sometimes the autism that we live with.

And I know that it’s not everybody else’s autism but this is our story.

Some parents may have a “Lucas” type of aspie in which case – they may see this as an unfair portrayal, but I also have a “Harley” and other parents of Harley’s will know where I’m coming from.

I’ve asked the question before: What Kind Do You Have? because I know from personal experience that extreme anxiety, aggression, anger and explosive behaviour are not always present in every child on the spectrum. But it is VERY present in one of mine and not in the other.

So…..

Everybody knows that once a month, most men walk on egg-shells around their wives, girlfriends or teenaged daughters right? Right?

I don’t need to go into specifics, but you all know what I mean when I say that some words or actions are just triggers that could potentially cause a major explosion. And most of you reading this are in fact one of these women that need to be given a wide berth every four weeks or so.

Well, this is a really ideal way of explaining what life is like when you have a child with high anxiety and aggression issues related to their particular brand of autism.

But the similarities end here because, this doesn’t just occur monthly. And its not able to be predicted with a calendar. This is far more constant than that and often far more volatile too. The end is not in sight and there is no 3 weeks “normal” period in between.

Now don’t get me wrong; I absolutely love my boy to bits but honestly, sometimes, it feels  like we are living with a bunch of moody teenage girls who are all cycling one after the other. There is no reprieve.

And other times it’s like we reside in a constant combat zone and the associated stress levels are constantly at an all time high in this household.

It’s why I believe that like a lot of parents of children on the spectrum feel like they live in the middle of a war zone. Like they have been thrust onto the front line and why they long for someone or something to pull them out of the metaphorical trench.
Because there really is NO break at all.

Anyone can avoid particular subjects or people for a short time but when you’re in it 24/7: there aren’t any down times.

I was sitting down having a deep and serious conversation with Mr Patient recently and we were trying to figure out why we seem to be always teetering on the verge of complete mental meltdown ourselves, and why the simplest things seem to set us off so much more than they really should.

We wondered aloud why we become so unsettled and angry by little things that other parents are seemingly unaffected by.

Because, the thing is; we know that not all behavioural related childhood traits are autism specific. We are aware that all kids have moments of defiance and pushing their boundaries but we’ve also noticed that other parents don’t seem to be pulling their hair out in utter frustration over the little things as often as we do. They seem to be able to shake it off a lot more easily.

And we figured that it’s got a lot to do with their stress ratings.

Let me explain:  Between us, we came up with the stress-o-meter as a way to help each other understand exactly where we are at. I’m sure that this is an age old technique that has some fancy psychology term, but we are simple folk and have found that this is what works for us.

Think of a long straight line. At one end of this line is a 5 and at the other is a zero and the goal is to stay aware of where we are sitting on that line at all times.

So, level 0-1 is ideally where we’d all like to remain but life often throws curve balls and many of us find ourselves reaching 3′s, 4′s and sometimes a 5.

Everyone has stress and everyone varies at their level on this meter but honestly-for us, it feels like we hover somewhere between 4 and 5 at all times. We admitted that we rarely if ever get down to a 2 and almost never on level  1.

And prolonged exposure  to stress often affects your ability to move lower on the line. I see it in my own Mum when she comes to stay. She arrives on a healthy zero and goes home somewhere between a 3 and 4 herself. By the end of her visit she is often asking things like; “Is it bedtime for them yet”?

And this makes me feel a whole lot better. Because it means that we are not the only ones who find it tough going here.

And I think that it’s got a LOT to do with how much time you spend dwelling in the trench and how much time you allow yourself or are permitted to climb out.

But here’s the thing. Climbing out is not always as easy as you would think.

Some days we really believe that we deserve to be in that trench. We become big  martyrs and tell ourselves that we aren’t doing everything possible for our children if we aren’t thinking about ways to help them 24/7.

We wrongly tell ourselves that any times spent doing anything non-autism related is time wasted that should have been spent on helping our child to better navigate this big bad world.

It’s like mother guilt only a hundred times more.

But this is not the only reason that some of us dwell in the trenches.

Sometimes, (and I can attest to this scenario a lot more than the former one),  we honestly have no idea how on earth we are going to get out of the damn trench because it’s all we know.

We become familiar with it and we start to carve out our own little niche. We tell ourselves that as long as we need to be there, we may as well make ourselves comfortable, and we gradually find ourselves slipping further and further down into the mire of that trench.

And the sound of gunfire rings louder as our stress levels rise with every coming day.

Because we haven’t seen sunlight for sometimes months, we start to become irritated by the smaller things that we would likely be able to block out or deal with if we knew it’s only going to be temporary.

But we know it’s not. We can’t see the end in sight. We can only see the (assumed) many years of heartache ahead of us. We’ve lost sight of the bigger picture.

We know that often there’s nothing to look forward to and that it’s difficult to take your eyes off the here and now and look beyond to the treasures that potentially lay ahead.

And some of us need a helping hand to pull them out of the trench. Like I did and still do.

If you’ve read this blog for a while you will have read that I myself have been diagnosed with clinical depression and am currently medicated to manage it. I have good days and my bad days and EVERYTHING in between!

I am one of those people who struggles to see the silver linings and can very easily sink because I simply forget how to swim. I often think that it’s impossible to climb out of the trench and I become overwhelmed and exhausted so much quicker than I really should.

But God knows this and has placed people around me who are able to help keep me afloat and help to pull me up when I find myself sinking into the pit again.

God is the one treading water whilst he hold my head above the crashing waves.

I still have that wretched self talk telling me that I don’t deserve it whenever I’m offered a break and I am overcome with emotion when someone does reach out, but I’m definitely getting MUCH better at this!

I have recently started walking with a close friend. Because sunshine boosts your vitamin D and sunshine also dries the mud in the trenches.

Laughter and friendship and being able to escape the war zone even once a week is incredibly important so I have promised myself that the self-talk is going to change.

I may not be honestly able to get down to a zero or 1 on that stress-o-meter whilst I have very young children…..but if I can get down to a 2 or 3,  I will get that much-needed reprieve.

I AM worthy, I AM capable and I will believe what God says about me NOT what my exhausted, tired and emotionally drained brain tells me to believe.

I’m allowing people to pull me out of the trench or inviting God to sit down in it with me and comfort me until I have the energy to climb out. Or let him give me a leg up

Either way….I KNOW I’m never alone.
Have a great weekend friends xx

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

~~~

I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

On Friendship And Laughter….

Many of you know that I have been extremely guarded with friendships over the past few years and I have put somewhat of a wall up around me as protection.

Part of the reason that I built this metaphorical wall can be traced back to the early days of Harley’s diagnosis. And I added a few bricks to it after Lucas received his because I didn’t want to let anyone in because I felt that I couldn’t relate to parents of typically wired kids.

I felt like an outsider.

I believed that I had nothing in common with any of them and that I would no longer be accepted by them because my kids were different. I imagined that I was being unfairly judged as a parent all the time and  I wrongly assumed that I had been also been tagged somehow once the boys were diagnosed. I honestly thought that my days of having a “normal” conversation with other parents were over for good.

It’s important to note that this was just my perception. No-one actually said any of that to me. My low self image probably contributed to it a lot more that I care to admit!

Lately, I have taken some time to sit down and reflect and have wondered why a person like me who seems to be hurt by words so much more than the average bear would dive into something as subjective as blogging in a public forum?

It doesn’t seem to make a lot of sense does it?

But somehow I have gained inner strength and peace through pouring it all out in print.  God has been able to use my writing as a therapy tool to show me His love and acceptance of me and to help teach me areas where I need to improve. I have had my eyes opened to things that I had formed a shield against.

Like friendships with parents of “normal” kids.

Recently, I have made a wonderful new friend who totally “gets” my strange sense of humour and has one that’s just as strange herself!  We have spent literally hours laughing till we almost cried about the silliest things and we just seemed to “click” from the get go.

You know how sometimes when you meet someone new and you know that you’re just MEANT to be friends? It just works and you can’t explain it. 

Well, we have found that we have a lot in common even though both of her children are 100% neuro-typical! 

Most of our conversations are over coffee (of course) and  seem to revolve around the crazy stuff our kids have done and she has blessed me in ways that she probably doesn’t realise just by being herself.

Naturally, many of the conversations we have had  have come back to autism and how it affects our family life, but not once has she rolled her eyes, glazed over or looked bored with the topic. She asks intelligent questions, she offers up ideas and has never undermines anything that I’ve said by making light of it.

She doesn’t live it day to day like I do but she also doesn’t begrudge me getting things off my chest either. I do try hard not to monopolize the conversation and I’m starting to talk about it less and less as we discover other topics that are fun to explore!

Laughter really is so therapeutic.  I love nothing more than sitting and giggling and smiling until my cheeks and stomach literally ache. My wall is gradually being chipped into. And that’s a good thing right?

~~~

PROVERBS 17:22 
A merry heart doeth good like a medicine!

The Broken Lighthouse In The Sea Of Aspergers…..

 As the mother of two children diagnosed on the autistic spectrum, I have been given the privilege of choosing to view the world through a completely different lens. And it is a choice. Many people make the choice not to look through this lens and continue to blame bad parenting or wrong life choices for what they see. But for me; this lens helps me to see and appreciate the small things that I may have never have noticed before, and it makes a lot of things clearer and has caused my focus to change dramatically.

The lens helps me to see past what regular folk might call naughtiness or selfishness and past what some may refer to as socially inappropriate actions so that I can see these behaviours for what they really are. I am a lot better now at determining the difference between autism related behaviours and that which are not. And in those instances that I really can’t tell….I tend to give the benefit of the doubt anyway.

But recently….this lens has become clouded and murky. It no longer provides the clarity that I once had and everything seems blurry and out of perspective. I have tried to clean it in vain, but as much as I polished and rubbed, everything remained out of focus and I was getting more and more frustrated as the days wore on.

It was becoming apparent that I either needed a new and stronger lens or someone who could come along and give it a better clean than I was able to. Someone who was able to peer into the lens briefly and see exactly what I was seeing but through different eyes and give me a different perspective. I needed someone like my friend to point out that the lens wasn’t the problem but it was me that had become exhausted and weighed down. And looking through ANY lens when your brain has as good as packed it in, is bound to show a whole lot of stuff you don’t want to see.

I needed this friend who was able to point out to me the good stuff which I was once again missing, because the crap that I wade through (metaphorically and literally) every day had caused me to seriously lose focus.

I’ve been complimented many times over the years on what a ‘great job’ I’m doing and how my kids are ‘lucky to have a Mum like me’  who has thrown herself into spreading awareness and understanding – and I love being built up like this – but I’m not sure that people realise that none of this comes without major effort and personal sacrifice.

Every day, I have to read all my children individually and determine what their needs are and always be one step ahead of them at all times. This is hard when they are often unable to communicate their needs and I have to translate general conversations and directions into their dialect and be the mediator between them and the rest of the world.

I foresee things that they’ve usually missed and I have to explain things that most people take for granted all.the.time.

I have had to learn to speak in a different tone and manner for each child and I need to speak to them in the way that they each understand. Autism is not a one-size-fits-all diagnosis and my kids all present incredibly differently when it comes to autism specific quirks. Throw in a spectrummy husband and daughter and the translating alone becomes a full-time job.

I was once described by a dear friend (who sadly no longer blogs) as the NT island in a sea of aspies and she was absolutely SPOT ON with that description! I constantly feel like I am the one that anchors this family and that they all just float around me randomly, lost and waiting for me to give them their specific directions. Sometimes I feel like the lighthouse on that stupid NT island warning everyone around me of danger despite how utterly exhausted I am.

Yeah – a Lighthouse is a great description, but one the is slightly cracked and with a broken flood light. A lighthouse who is no longer able to shine as brightly and one that is crumbling from the inside out. A lighthouse who is unable to manoeuvre herself off the island because the weight is just too much to bear.

This lighthouse has been desperately in need of repair and a little TLC to restore her to health once again.

All of this has gotten me to a point lately where I had to pull out and play the selfish card. I had to pull back from friendships because I literally had NOTHING left to give and I had to tell people that I was too tired/drained/miserable or exhausted to help them. A lot of people seem to come to me for help and for guidance even though I can barely cope with my own family and turning people away was hard but oh-so necessary.

I can’t keep giving out from a reserve that is completely empty. I may have appeared to be doing AOK, but inside I was suffocating and slowly and painfully dying.

Recently, a wonderful friend encouraged me to go and seek some help, so I took myself off to the Dr and broke down crying in her office. I told her that I was sleeping all.the.time and that I had no motivation to do anything. Getting up in the morning made me cry. Driving the kids to school made me hysterical and I was physically sick every afternoon as 2:30pm approached and I realised that I had to go and collect the kids again. I clearly wasn’t coping. I was desperate. I actually don’t enjoy being this way and I wanted to escape it all.

Whilst I regularly watch my son Harley spiral out of control via behavioural explosions and insomnia in times of stress, I personally retreat and sleep so I don’t have to deal with anything.  It’s a classic case of flight mode for me and fight mode for him.

I discovered that all of these signs that I was displaying, were major indicators of me being once again engulfed by major depression and I realised that I really did need professional help to get through it. My Doctor doubled the dosage of  my medication and ordered a number of tests for me to undergo. I’m still awaiting some of these results.

Even though most of this occurred almost a month ago, I have resisted writing much about this for a little while now because depression has a massive stigma attached to it. It is more than just being a little bit sad. It is not a choice and it is not a way of trying to attract attention. It is very real and debilitating but there is a major misconception out there that depression is just a negative state of mind.

No-one would ever tell a diabetic to snap out of it and that they don’t really need their insulin, nor would they tell a paraplegic that their wheelchair was an attention-seeking device, but because depression – like parenting autistic children – is so majorly misunderstood….sufferers generally suffer in silence.

Which is really sad because studies have shown that talking about your struggles and feeling heard is a major step towards gaining healing and making progress in the right direction.

This friend also taught me that hope is what pulls people through. We all need hope at the end of the day. Something to live for, something to keep us going despite our struggles. We all need someone to believe in us and we need to ultimately learn to believe in ourselves.

*******

I was crying out to God this week…begging Him to repair this lighthouse, pleading with Him to help me to keep shining out the beacon of hope to those that have been entrusted to me, when He gently reminded me that I am supposed to look to Him to be my lighthouse and that I am trying to do too much in my own strength.

He reminded me that He is supposed to be the guiding light and I am supposed to be the vessel that He shines through. And with this HOPE that I have, I can continue knowing that it’s all going to work out in the end.

John 8:12

 ¹² When Jesus spoke again to the people, he said, “I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life.”

Placing down the load.

So there has been a lot going on behind the scenes here lately. I’m not ready to share any of it publicly but I wanted to blog a beautiful inspiring email that I was sent by two different friends last week that really encouraged me.

A lot of you may have read it before, but it is so good and applicable to parents of special needs kids that I’m going to share it here again for those that may not have seen it…

A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, ‘half empty or half full?’… She fooled them all … “How heavy is this glass of water?” she inquired with a smile. 

Answers called out ranged from 8 oz. to 20 oz. 

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it.  If I hold it for a minute, that’s not a problem. 
If I hold it for an hour, I’ll have an ache in my right arm.  If I hold it for a day, you’ll have to call an ambulance. 

In each case it’s the same weight, but the longer I hold it, the heavier it becomes.” She continued,

“And that’s the way it is with stress.  If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”

“As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced. 

So, as early in the evening as you can, put all your burdens down. 
Don’t carry them through the evening and into the night… Pick them up tomorrow. 

So for now, I’m placing my glass of water down for a rest to get refreshed and to ease my load. It’s gotten far too heavy to hold for extended periods and I need God’s strength more than ever.

I hope all of you realise what a wonderful and sometimes thankless job you are doing and that you are not alone.

Fi x

Facebook and Thunderstorms.

I remember back when I was only a small child and the one thing that I was majorly petrified of was thunderstorms. And I also remember how I used to climb into my parents bed until it passed and only there and then, did I feel safe.

As a child you just expect your parents to be braver, stronger and wiser than you are. You assume it goes with the territory.

However, I’m sure that there were many times that things frightened or unnerved my parents, but they continued to stay strong for our sake because that’s just what parents do right?

Well….now that I’m a parent myself, I sometimes wish that I could still climb into my parents bed, pull the covers over my head and let them deal with whatever or whoever had upset me.

But I know that I can’t do that anymore. I have to be the provider of a bed to hide in and I have to step up and be the brave, strong and wise one.

And we all know how incredibly tough that can be at times.

I am realising that my children expect from me what I did from my parents and to be frank – that scares the heck outta me!

Because I am far from having it all together.

In fact, just today, I was “unfriended” by someone on Facebook whom I thought I had a good relationship with.  And it kinda hit me from left field and yeah – I’ll admit it: it really upset me! I wanted to go to my Mum in tears like I would have done when I was 12 and require her to say all the right things and make me “feel” better and put an emotional band-aid on me so to speak.

I wanted to find out what on earth I had done wrong and I wanted to stamp my foot and scream like a petulant child.

But I couldn’t.

A remarkable friend of mine wrote to me: “It is all part of the tapestry of life, dearest Fi. Life is too short to give energy to this kind of thing. Try not to let this person be ‘rent-free’ in your head space!”

 What awesome advice!

So here I sit, calling myself a Christian and knowing that I am loved and accepted by God BUT still letting silly little things like this steal my joy. It really is ridiculous when I KNOW in my head that they really don’t matter in the grand scheme of things. It’s moments like these that I get to choose to either learn from them an grow a bit more, or allow it to consume me and ruin my day unnecessarily.

And the similarity between my socially challenged children being bewildered by social reactions – and me being completely blind sighted by this unexpected unfriending was not lost on me at all!

I can only imagine how hurt my boys must feel when someone “unfriends” them in real life when they have no clue as to what they’ve done.

I have a better (though not complete) idea now of how confusing it must be to my boys to think that they’ve said and done everything correctly in a social situation only to be turned away by people that they really believed liked them for who they were. And it’s helped me to understand better why sometimes after school, Harley comes home and throws the metaphorical sheets over his head and hides from the world.

It’s because I am SAFE.

I love him no matter how he acts…..He knows that I will never unfriend him and that he doesn’t have to put on airs and graces with me.

And that right there – is incredibly special to me. I have realised that I AM the parent who can calm my child after thunderstorms and I AM the parent who provides the safety that he needs until the storm has passed.
Life is damn hard at the best of times with a neuro-typically wired brain…..but when every single social situation is as different as the seasons…..How much more challenging is it for those on the spectrum?

I am comforted by the knowledge that God will NEVER unfriend me no matter what I say or do and that is what I intend to teach my children.

Out of the blue.

I really love it when people surprise me.

It can turn a rotten day into a great day. Or a “better” day at the very least.

 My husband is referred to on this blog as “Mr Patient” but I’ve never (until now) explained the full reason for giving him this pseudonym.

It’s kind of a family in-joke. The fact is: He is probably one of the least patient people I know and therein lies the irony. Calling him “Mr Short-Fuse” or “Mr Can’t Cope” doesn’t really have the same comforting notion attached to it. People don’t know where to look or how to act when you describe someone the way it really is. So I opted for the kind approach.

But don’t get me wrong: Mr P is a wonderful man, a loving husband and a great father, but he just doesn’t cope well with the children and their noise levels and consequently: most of the child rearing falls on me.

No, it’s not ideal but I can see that he doesn’t handle them and their “stuff’ because I can also see a lot of AS traits in him that contribute to his lack of coping mechanisms. And both of us have developed big sensory issues that we never remembered having previously.

So I make allowances for this and usually take over the kid stuff to keep the peace.

However, this past week I have been under a lot of pressure from all angles. A lot has been going on and I haven’t managed my stress levels very well I’m afraid. I have been very teary, sleepy (a result of me wanting to shut down) and more than a little brain fried.

But as all mothers do – I’ve soldiered on for the sake of my kids.

Until this morning: I sat at the table eating breakfast trying to block out the cacophony of noises surrounding me.  There was screaming coming from Harley – something had set him off and I didn’t really care to know what.

Lucas was throwing his teddies at the wall and catching them on the rebound and Ella sat with her iPod buds in her ear in an attempt to block out the chaos. Half her luck!

Mr P was in the kitchen unpacking the dishwasher and every clang and clunk made my skin crawl. I felt like I was going to explode with anger.

I took my now empty bowl over to the sink, glared at him and stomped off to our room.  I KNEW I simply had to get a grip. But the tears flowed as I felt myself sinking deeper and deeper into the familiar territory that is depression.

I wondered aloud if I had taken my medication this morning and went back out to the kitchen to count the tablets in the box so that I could find out. As I turned the corner to the kitchen, Mr P took one look at me with my tear-stained face and slumped shoulders and said: “Woah….We need to get out of here”.

“I’m not going anywhere, can’t you see I’m exhausted” I screamed at him spinning on my heel. His shocked face didn’t register at first but it softened as he replied:

“No, ‘we’ meaning the kids and I. I’m going to take them out for a couple of hours and give you a break”

 I looked at him to see if he was messing with me.

“You’d really do that?” I enquired. It was an unusual offer for him to make. He knows that he can’t handle them all together and usually only takes a maximum of 2 at a time.

 “You need it, you need to rest”. He answered. “I will make it work. They’re our kids and I don’t do enough to help you.”

“But the boys need to be pre-warned, you can’t spring it on them like this” I protested.

“So tell them now” he countered.

Ella walked over to me at that moment and put her arm around me and rested her head on my shoulder. She said: “It’s ok Mum, I can help Dad with the boys, don’t cry, it’ll be fine, you’ll see”.

I walked into the boy’s room and sat down on Harley’s bed and told them that Daddy was going to take them all for a drive.

“Your eyes are wet” stated Harley.

“I’m hungry” said Lucas.

And with that – I knew that they would be ok.

Mr Patient then ushered me back to the bedroom , closed our blinds and pulled back the sheets.

Almost two hours later I woke up refreshed and with a restored faith in my husband.

 This is why I KNOW that God is good.

 He will always provide the rest that we need but it doesn’t always happen in the way that we expect it will.

Finding a little bit of happy….

As I sat down at the keyboard this afternoon, I wondered where on earth I should start after a well-needed long-break from the interwebs.

Some of Dad's books

Should I start writing about the overwhelming bursts of grief and sadness that I experienced whenever something at Mum’s house would trigger a memory of Dad? Like the day I opened a cupboard in a bedroom looking for a spare pillow but instead found Dad’s Firefighter’s axe, helmets and uniforms stored there? Or the bookcases that are still crammed with the years and years of steam train memorabilia that he had amassed over his 61 short years?

No…that’s still too raw to write about. Seeing these kind of things is like a punch to the stomach – it continues to cause pain even hours after the fact.

So maybe I should write about the person that I ran into in town whom I haven’t seen for years that announced to me that she thought that my boys were “kinda weird and awkward”  and that they “freaked her out a little bit”? 

Dad's helmets

No, it isn’t going to do anyone any good by focusing on hurtful words whether they were intended to inflict wounds or not. Or perhaps I should write about the BBQ that we all went to that I had to make a hasty retreat from with Harley because he went into an extreme anxiety meltdown because he had taken something that I had said to him waaay too literally.

Nope again. These things I might re-visit later on when I’ve had a chance to work through the emotions attached to them and can learn from those experiences rather than blurt a whole lot of negatives that I will one day regret. God will help me to grow through these experiences but I’m not quite able to see the good in them just yet.

So instead, today I want to write about finding happiness.

If you’ve typed ‘define happiness’ into a search engine and it brought you here – you may be disappointed. You’re not gonna get the formula for happiness but what I can offer is an insight into the goings on of my little family over the past month or so and how we have managed to be content with our lots in life.

Happiness comes in so many various forms that it’s impossible to apply a one-size-fits-all approach to discovering it, but I have been thinking a lot recently about what true happiness really means and have wondered how it applies to my own life.

But firstly, I think it’s important to realise and note the difference between happiness (the emotion) and a deep-seated joy (state of peace and contentment). I believe that you can be filled with joy but still experience times of sadness and also that you can have a thankful and joyful heart, but still struggle to feel “happy”. And that’s all totally ok.

In the bible it says that the joy of the LORD is our STRENGTH and that it SO true for me. I find that in the times of my biggest struggles, choosing to rejoice and remain in that state of deep joy DESPITE what is going on around me really does allow God to strengthen me. I can still be sad but the strength that comes from the joy sustains me.

And that’s what I think the difference is between happiness and joy. Happiness is fleeting….joy is permanent IF you make the choice.

I love the quote:

“Being happy doesn’t mean that everything is perfect, it just means that you’ve decided to look beyond the imperfections”.

I’m really beginning to see that everything in life really *is* all about choice.

There were a lot of crappy things that happened these school holidays and I won’t lie and say that I handled them all (or my emotions) appropriately but what I will say is that making the decision to move on and not let other people’s words steal my joy was a fabulous decision.

This break that I have just had up at Mum’s with the children has been oh-so cathartic for me and that’s why I have decided to take this blog in a new direction this year.  Whilst it will still be primarily about our family’s daily life with autism, I will also be incorporating anything that takes my fancy!

I’m starting to realise that last year in particular, I laid aside a lot of the things that I enjoy doing and threw myself so far into learning everything and anything about autism that I started to feel like I’d lost “me” and started to long for those things that once helped to keep me sane and created pure joy.

Now don’t get me wrong – I will continue to research, read and trial all that I can to help my boys get the best success rates in life – but I will also be dedicating a lot of time to looking after me.

And this is where my friend Alysia comes is. When I read *THIS POST* that she wrote recently, I cried.

I cried because it hit close to home and because I knew she was onto something big. I felt like I wasn’t alone in feeling overwhelmed and treading water in the sea of autism and all that it encompasses.

In case you haven’t heard or read – she and her friend Shannon have started up the Oxygen Mask Project.

I linked directly to their “Our Mission” page so click on the link and go take a look. It is described perfectly. We as mothers need to take care of ourselves and apply our own oxygen masks first. Then we can be the best Mamas for our kids.

It really is so simple but so many of us miss it.

This year I will be at home alone for the first time in 12 years. My baby starts school and I’m taking 6-12 months off before I start looking for work. It’s going to be MY year.

My plans really are as vague as they are varied but I hope to spend more time writing songs on the piano, reading my bible and making a dent in the piles of books that I have intended to read over the years.

I hope to sew more, bake more and relax more. Not in any particular order

I have stopped searching for things to make me “happy” but instead have decided to purposely seek out the positives in all situation. I didn’t say it was going to be easy, I am naturally a glass half-empty kinda girl but with God’s help – I can do anything!

I found this on Pinterest and I absolutely ♥ it!

So there you go …

Right now the score is –  God&Fiona :1   Depression: 0

HA!

~

~

Back-up has arrived!

You know when you’re watching an action movie and there is a cop in the midst of a hostile and stressful situation that is rapidly escalating and he grabs his radio and calls for back-up?

And then when the back up arrives, he is no longer under threat of being out numbered and having the stuffing knocked out of him and he looks visibly much more relaxed and in control once again?

Yeah, well that’s kinda how I feel when my Mum comes to town to help The knowledge that there is someone else who has got my back and who ‘gets’ my kids is really quite a relief!

Last weekend, Mr Patient bundled both of the boys into the car and drove the 6 hours trek up to collect my Mum and bring her back here for Christmas. Ella and I stayed home together for a much-needed ‘girl’s weekend’ and let me tell you:    It-was-awesome!

.

 No screaming fits, no fighting, no tantrums or meltdowns and no sleepless nights. And Ella and I were able to have REAL conversations without being interrupted and yelled at. On the Saturday, we went with a friend down to a quaint little village and spent the day doing brunch, coffee and exploring the beautiful little craft shops and handmade lollies, jams and ice-cream….YUM!

We watched movies together at night over hot buttery popcorn and for the first time in a while – we both relaxed.

The boys arrived home the following day and from the second that Harley set foot in the door he was off his head. He screamed at everyone, he stomped around like a bear with a sore head and he was just plain miserable. The change in routine obviously messed with him so we just gave him a wide berth and left him alone to get it all out of his system.

Ugh!

There’s always a price to pay when we interfere with his expectations but lately I’ve really taken the standpoint that he needs to suck it up and realise that yelling at everyone else is just not socially acceptable behaviour. I’m still trying to figure out how to do this in a loving way but I’m coming up empty.

We have had to go to the shops on more than one occasion this week because with Christmas being only 3 days away, there are lots of little bits and pieces that need to be bought and errands that need to be run. And Harley has made no secret of the fact that he is NOT happy to be dragged around shopping centres.

To be fair – I know that it is extremely busy and overwhelming sensory wise, and there are people everywhere but we try to prepare him the best way that we can prior to leaving and try not to be out more than an hour at most, yet – he still continues to carry on and perform like a spoilt brat every.single.time. He is aggressive and cranky and verbally abusive to all of us.

And I’m completely over it.

Last night, I wrote on Wonderfully Wired’s Facebook Page  (which if you haven’t ‘liked’ yet…..you need to – I know, I know, shameless plug there!)

I really need to figure out how to teach Harley about the need to do things he doesn’t like (like shopping for necessities like food) and that the family doesn’t revolve around him and what he wants to do all the time. I know that sounds mean but sometimes I wish he would just suck it up because I try my hardest to accommodate him and his needs and requirements but he doesn’t give an inch…

I mean, it would be different if I expected him to go shopping every single day. Or if I expected him to spend hours upon hours walking around browsing, but I don’t. We go to the shops with lists and a specific purpose, I plan it down to the minute and only go where I absolutely have to. I leave the rest of it for the times that I can go without kids so I don’t think that I’m expecting too much from him. He just doesn’t want to go, that’s all.

I have a wonderful friend Lisa who is an adult with aspergers and she told me that for herself – she needs to plan breaks to just escape the crowds where she just focuses on things that make her happy before going out into the masses again.
So I’ve taken that on board and will try to schedule some of those in. And then when she gets home again she plans to do her favourite things to calm down again. And my wonderful friend Bec wrote on WW FB page that she acknowledges out loud that she realises that her son is feeling upset and gives it a name as her son is still quite non verbal and that  he seems to relax a little when she does that because then he thinks: “Thank God she knows..”

She said that validating her son was what he needed and I agree that it is JUST what Harley would need as well.

It might seem harsh that I am not more accommodating to his needs and you may ask why I even take him out at all when it would be easier to just leave him at home with Mum.

Well – this is how I see it:

One day, my son will have to find a job, find a place to live and shop for groceries if he wants to survive. He will need to go places that make him uncomfortable and he will need to be civil to people whether it is difficult or not. Being aggressive and cranky won’t fly with people in the big bad world. People won’t ever be as tolerant and understanding as we his family are.

And one day – he will be too old for his mother to step in and explain that “He has aspergers, and is still learning social protocol” to strangers.  He is going to have to learn to keep his anger in check and his dislikes quiet.

Because the simple fact is that whether it’s fair or not – that’s just the way it is. And I’m not doing my job as his mother if I don’t expose him to these things in small doses now. How is he ever going to learn how to behave if he’s not taught?

These things are not intuitive in him like they are in me. He is still learning that strangers don’t HAVE to like you. Strangers DO judge you on what you say and how you act and that it’s up to YOU to not give people reason to avoid you.

And please don’t leave me comments saying that I’m an intolerant mother who is trying to change my son into something that he’s not because if you think that – you’ve completely missed the point of this post. Because I love my son exactly how he is: and there’s nothing that he could do that would make me love him any less, but I am also neuro-typically wired and I see a lot of the little things that he misses.

I see the looks he gets when he performs badly in public places. Yes – I wish people were more accommodating and tolerant but – they’re not. I see how other kids look at him when he’s perseverating on a topic that bores them and I notice the way that adults look at me for an explanation when he says something completely inappropriate or blatantly rude – I see all these things and so do most of his peers. And instead of allowing these things to cripple me emotionally – I am going to do my darndest to teach my son what he needs to know to survive in this crazy mixed up world or ours.

But I’m not doing it alone.

Every day I pray that God will guide my tongue so that I don’t destroy him with words. I ask God to watch my actions and to alert me if I’ve done something that could potentially take him ten steps back and I make sure that I tell him that I love him and who he is every.single.day.

And I really honestly do.

But right now, I have back-up. Harley is getting double doses of guidance, correction and most importantly of love. And I KNOW that he is going to grow into an awesome young man because God doesn’t make junk.  Sure – Harley  may be a squeaky wheel now but the upside to this is that he will NEVER go un-noticed or forgotten. And that’s a good thing right?

Right.

Well – I’m off to have a coffee and a slice of the gluten-free decadent Christmas Cake that I just made with 8 espresso shots, an entire block of fruit and nut chocolate and half a cup of Baileys!

Happy Christmas All xxxx

Do you see what I see?

There are a whole entire series of events that have contributed to my ‘inspiration’ for this post but I won’t go into any major detail on here. This blog was never intended to be a platform for nasty rants and I don’t believe that belittling people or starting an all-out war online is conducive to encouraging harmony and peace to flow in our lives.

But in a nutshell - there are some people in our personal lives that have said and done some pretty awful things to us lately. People who are still of the belief that it is bad parenting that is to blame for the difficulties that we face and not due to the tumultuous journey that autism takes you on every day.

This out of line nastiness has been directed at all of our kids and us as parents too, but particularly Harley who has been quite hurt in the process.

The abuse of power came mostly from someone he should be able to trust and we have had to learn the hard way that not everyone sees what we see when we look at our beautiful children.

And here’s the thing: When one of my kids hurts…I hurt……and then the  Mama Bear inside of me that’s usually quite well-tamed,  gets stirred up and becomes more and more aggressive and wants to pounce.

Get the drift?

Good.

When I look at my boys – I see that they are incredibly misunderstood. I see that they often don’t fit into the world’s ideals of acceptable and it makes me mad that I constantly have to fight for their rights.Their basic right to be counted and accepted for who they are NOT for what these people want them to conform to.

~

 On the weekend, we had Mr Patient’s work Christmas party. It was held at a very ritzy hotel – the same one that President Obama stayed at when he was in Sydney and we got to dress up and be grown-ups for a whole entire night!

We checked into our room on Saturday afternoon and gazed out our window overlooking the heart of the city and I was completely blown away. Totally awe-struck and filled with excitement – just like a child on Christmas morning. It was worlds away from the day-to-day life that I am used to and it felt SO right for me to be there.

After we’d checked in we went for a short stroll down to the iconic Sydney Opera House (which was just around the corner) and we took our photographs in front of the beautiful Sydney Harbour Bridge in the distance. I had reservations about leaving my boys to go away that night, but had allowed my husband to convince me that I deserved this break.

After a coffee and a quick catch up with some friends at a café on the Harbour we headed back to the room to get ready for the fancy dinner that was due to begin only a couple of hours later.

I’m really not sure exactly when my world started to crumble that night, but I have a suspicion that it was around the time that we were ushered over to talk to one of the big wigs from Mr Patient’s office over drinks about half an hour before the dinner even began.

This man was the centre of attention in our small group as he boasted about his daughter’s grades at school and how “HE” had been instrumental in pushing her to get them. He spoke of the (ridiculous) incentives that he had put in place and waxed lyrical about the promising futures that his children had in front of them because they had learned the importance of good grades and hard work.

He said that he wasn’t happy with Bs or Cs and that without As…..he knew his children had no future in life.

And that was about the time that I started biting my tongue.

And I was biting it HARD!

I suspect that the wives are expected to just suck it up, smile and look pretty at these fancy events, but as the conversation with this man continued, I felt Mr Patient’s grip on my leg tighten with every word that this boastful horrid man spewed venomously from his mouth…

My husband knew that I was brewing up a filthy storm inside of me and that it was only a matter of time before I exploded. He knew that Mr Mouth had hit a raw nerve in me and that I was not a happy camper.

But I had enough sense to not put my husband’s job in jeopardy and chose my words very carefully and spoke respectfully as I looked this man square in the eye and asked him:

“So, What about the children that don’t manage to get As but still give 100% effort in all that they do. Do you think that they won’t succeed in life? Is their future doomed?”

And he replied: “Yes. I believe they are, grades are everything. There is no room for success without being a high achiever and it all starts at primary school”.

So then I asked him: “But what about children like my son who gives their all but the school system doesn’t cater to the way that they learn?”

“Then they need to try harder” he replied. “It’s as simple as that”.

I gritted my teeth and forced out a smile because I knew that it was neither the time nor the place to make a scene but I was unable to just shake this one-off.

And I have spent a lot of time today rolling the events of this weekend over and over in my head and I have come to the conclusion that it all boils down to something as simple as perspective.

Because: perspective is what shapes the way that we form opinions on pretty much everything in life. And perspective is what allows us to choose what’s really important to us and to show us what’s not and gives us the tools to decide how we are going to react in any given situation that presents itself to us.

You see….not too many years ago – I suppose that I too saw things completely differently to how I do now. And God has shown me that these people in our life who are causing grief right now and this man at the dinner aren’t viewing our life through the same lenses that we are. Their perspective is entirely different to ours. Their focuses are on other things and it’s easy for them to shun that which they aren’t confronted with on a daily basis.

They have the luxury of choosing to be and stay ignorant about autism and it’s many challenges and they don’t have to make the same allowances or battle the same demons that we do.

They are walking an entirely different path and have made the choice to judge and form uneducated opinions on that which they don’t care to try to understand.

But none of this is our fault.

This is all because these people don’t SEE what we SEE!

They see non-compliance and disobedience but not hurting, confused children.

They can’t see past frustrated temper fits to discover the beautiful little boys with can-do attitudes and more love than they can possibly contain.

They are focused on the struggles, the “different” and what they consider to be wrong about our kids because they don’t have our untainted and glorious perspective.

And I thank God for the grace that He’s given us to raise these kids. I thank Him that He has opened our hearts to receive more than we ever expected possible. We rejoice in achievements that other parents take for granted.

For us – the little things are often BIG things and we consider ourselves to be incredibly blessed, but I am learning that the downside to having a softened heart is that we are also easily bruised.

But bruised is most definitely not broken!

And we are constantly surrounded by other beautiful people who DO see what we see and share the same unique perspective.

And for all of you – I am extremely thankful.

Have a great week

Fi x

Unsent letter

To the person who has hurt us,

You do know who you are,

I want to tell you here- right now,

That you have gone too far.

.

I want to let you know that we,

Still love you just the same,

But it hurts me when you judge our ways,

And give me all the blame

.

You know my life is not like yours,

And it will never be,

I do the best with what I have,

So please don’t bad mouth me

.

My children know that they come first,

And have my full attention,

So forgive me now, if you’ve to wait,

And I am not perfection

.

I feel that you just inward look,

And make it all about you,

But in THIS house, we’re not that way,

You never seem to approve

.

I’m sorry if you feel that I,

Have been a dreadful pain,

I have no time for childish rants,

It’s puts me off my game

.

My days are filled with ASDs

And everything that includes,

So give me grace when I am not,

Always in the happiest moods

.

I’m sorry that I sometimes get,

All tense and non compliant,

But all this stress has turned my woes,

Into a towering giant.

.

I’ve never claimed to be immune,

To snapping under pressure,

But bringing up the past to us,

Just brings us such displeasure.

.

So instead of focusing on yourself,

Why not offer to shoulder our burden,

And walk a mile in different shoes,

Before just spurting your poison.

.

I work so hard but still you want,

To criticize me and complain,

You won’t believe in ASDs

So it’s always just the same…

.

I’ve tried to tell you all I can,

But you don’t want to listen,

So saying that I am “not right”

Has been your latest mission

.

If I’m “not right” then why do I,

Do most of this myself?

And manage to raise gorgeous kids,

With barely any help?

.

The things that you’ve complained about,

Weren’t done to tick you off,

My heart was right, and full of love,

But now….I’ve had enough

.

I can’t go on pretending that,

Everything is now okay,

I’ve tried my best – but it’s not enough,

I’ve nothing left to say

.

I truly hope that you get to,

The place where you find peace,

I pray that God will bless you lots,

And that this tension now will cease…..